Strengthening Childhood Cancer Care in Nepal (DECAN-CHILD): Protocol for Evaluating Quality, Financial Burden and Health System Readiness Through a Prospective Cohort Study

Background Strengthening health systems in low-and middle-income countries (LMICs) like Nepal is essential for equitable, high-quality diagnosis and treatment and improved survival from childhood cancer. This study aims to quantify care intervals and their determinants; assess the quality of care and 1-, 2-, and 3-year survival; quantify the costs and cost burden of childhood cancer treatment from family and health system perspectives; and to assess the capacity of health systems in Nepal to diagnose and treat children with cancer. Methods This three-year prospective cohort study will enrol and follow consecutive childhood cancer patients aged 0-19 years registered at six tertiary hospitals in Nepal, accounting for approximately 90% of childhood cancer cases diagnosed nationally. After obtaining informed consent and assent, a semi structured questionnaire will be administered to patient/caregiver at baseline and every three months during the first year and every six months in the second and third years. Patient/caregiver data will be supplemented with patients’ medical records kept in the hospital. A national capacity assessment will assess readiness for childhood cancer care in tertiary-level and secondary-level healthcare facilities involved in referral, diagnosis, treatment or shared care. Survival outcomes will be examined using Cox proportional hazards models and random effects models to account for hospital clustering. Out-of-pocket costs will be analysed using descriptive statistics and a two-part regression model to account for zero-inflated cost distributions, with five-year health system cost projections modelled to estimate corresponding rates of catastrophic health expenditure and medical impoverishment. Discussion This study will generate comprehensive evidence on childhood cancer care, costs, and health system capacity for care in Nepal. Findings will directly inform policy guidance, resource allocation and benefit package design for childhood cancer care in Nepal, inform comparable efforts in other low- and middle-income countries (LMICs), and will contribute to Nepal’s efforts in the WHO Global Initiative for Childhood Cancer towards improved cancer outcomes.